Respite

For issues specific to caring for someone with learning disabilities
Hi has anyone else been having problems getting respite this year? I care for my 75 year old brother with Learning Disabilities, in December I was told his respite was being cut. After much debate they decided he could still have six weeks. I was then informed the local Care Home he stays at was only taking people for Full-Time Care, but they found him another place in a Town about Twenty miles away. He went last week and absolutely loved it.
Tonight I had a phone call from social services informing me that this Home is also being closed to respite, also I had asked for a week in June which had been agreed, now I am told to ring up two weeks before to see if I can still have it. I asked if respite was for the Carer to take a break as how can you make plans if you don't know if the dates are available. How can you book anything? Got told you can still book something, how? if you have to cancel and lose deposits. Oh well I know us carers are rolling in money :) lol!!!
I have gone from feeling a bit more relaxed to stressed out again :cry:
Maybe it is time for him to become a resident of this home, with you bringing him home to you for weekends?
When did he last have an updated Needs Assessment, do you know what his care plan is, and his personal budget? When was your own Carers Assessment last updated? Maybe it's time for you to become a semi-retired carer like me? My own son has LD, aged 38, lovely chap, but very tiring, as his mental age is about 3 years old. I can't cope with him full time but we both look forward to his visits home every second week or so.
Thank you, you are very kind and understanding. I think probably it will come to full-time care as you say. He has had financial assessments yearly, the one carer's assessment I had was probably 10 years ago when I took over his care. Mum had let him slip through the net as they both got older and kept him at home, so it was hard to get some help. He is very lively and lovable but hard going especially when he gets into a tantrum. Think I will phone back and see what happens
Purely as an historical note , difficulties such as described in the opening thread started in 2004 with the first wave of LA cutbacks.

Since then , a tidal wave followed together with the raising of the eligibity hoops.

2017 ? Still continuing as more and more carers are finding out ... to their and their caree's cost.
Hi Linda
It seems very short-sighted for them to not provide 6 weeks respite compared to the cost of full time residential care. Maybe this needs to be pointed out to higher management within your local SS?

If they can't provide residential respite, what would they need to provide so brother could stay at home while you go away?

And I'm sure there are many others having trouble finding respite cover too. It's pretty general across the country.

Kr MrsA
The other extreme here, as I would be referring to younger people, but always.

Of my carees (sibling) one has some respite entitlement, however very few respite venues are willing/able to accommodate them, and even then it is not really respite, because I am physically required to be in close proximity at all times due to the level and complexity of care required.. it would be a palliative/end of life venue as the condition is life shortening (at this stage they could be otherwise fine yet still slip away, as is nature of it) so I would be sleeping in a relative room for how ever many nights they get.

Growing up they used to be able to go alone, I'm only a few years older and from what I recall this initially ended because of suspected abuse at a service provider, but also their condition came full circle in adulthood and without somebody to be able to go through their routines/explain the condition properly they'd be lost, worse even come to harm/neglect due to people not knowing what they are doing.

Irony is under SS as a young person they were allocated more respite then.
Compared to today where under NHS CHC they are allocated far less in spite of allegedly being fully funded, and the venues are mostly unsuitable for them or in cases dangerous due to staff inexperience or bad design (some were converted houses you could barely turn a wheelchair around safely in nevermind get a hospital stretcher through)

You get left feeling like they are being punished for exceeding expectations/still being alive, common trend of those with learning disabilities or any rare/complex disorder as they move into adulthood sadly.
Sorry to hear that Honey Badger. I think its been raised here before, not least by Eun about Robert
It's too easy for SS or NHS to agree respite is needed but another to actually ensure it can happen, safely and fully funded.

Seems to me that you, and people in similar situations, need a "mini-me" replacement who can step into your shoes so you can go leaving caree in safe and trained hands. Is such a service available anywhere?
Care at home would not work Mrs Average. Tried that when he first had respite. He didn't like being left when I went out and it caused a lot of problems with replacement carers.
6 weeks respite is box standard...You are entitled to 6 weeks anyway. Yep, hard to get them to budge but not impossible.
After much hastling them and getting told "Oh it's you again" I have finally got my respite back :) and wait for it an extra day at his day centre WOW!!! :)